Week of Wow

This past week has been one of the most intense, rewarding, thought-provoking weeks in my life.

It started on Monday with my first appointment with a new, amazing acupuncturist (Lynnea, who is also a medical doctor.) I knew that the visit would prompt positive changes, but I had no idea how badly I needed them.

Here is how it went: I arrive slightly short of breath. Lynnea asks if that is normal for me, I say yes. She right away gives me about 10 needles in my neck and shoulders while we sit and talk for the next 30 minutes, which seems to help my breathing. Over the next 3 hours we discuss my entire life's medical history (illness, surgeries, mental states, drug experimentation - everything!)

When she finds out that I am a regular alcohol drinker, a 20-minute digression ensues into the harm that alcohol is doing to my body - liver, kidneys, brain, it's especially bad for people with diabetes.

This led to a minor breakdown - and I have to say that ultimately it was more helpful than any single session in my years of therapy. Lynnea hit upon very raw and sensitive spots for me - she has a knack for finding those from what I can tell. It's not about judging me, she is speaking up for what my body wants. And, she said, I am sometimes going to hate her for it. Tough love!

There is a Chinese saying:
people with a strong constitution 

tend to abuse it.

She spelled out how my fortitude - which has done so much to help me cope and manage my disease thus far - has also allowed me to 'plow through' some other issues without really stopping to let them sink in. As in, coming to terms completely with the fact that I have a chronic disease that is going to eventually kill me. Not just my brain, my brain and my heart. This stuff's not for amateurs.

It's hard to believe it, but I think that she's right: part of that rebellious teenager sneaking cigarettes outside my bedroom window (I know, right???) is still inside me. Alcohol - not always, I would argue, but more at certain times in my life and recent history is definitely one of those times - helps me to escape. It is my escape button.

How do I know she was right? Now that I have quit for 7 days, I see all of the mental energy it has freed up. Before, I was constantly caught in these cycles of wondering, how much is okay for me to drink today? Should I drink today at all or is that bad? Fuck it, I feel like drinking today! And then...   Did I drink too much yesterday? Because I'm feeling a little dehydrated this morning, maybe it's beer last night, I must drink extra water today!  ...My body feels tired because I have been drinking too much lately - bad me! ...I was good yesterday, I only had two beers. Etcetera, etcetera, etcetera.

All of that was just an illusion - a (very successful) game that my brain had invented to avoid sometimes having to think about how difficult and shitty it can be to navigate life with a chronic disease - in part. In part, it's just that I really really love Blue Moon (and beer in general.) Which is why it isn't my intention to never ever drink again, good lord. I honestly don't know how this is going to play out, all I know is that right now I need to not do it at all.

I could go on and on...  But to wrap up this story, Lynnea had a lot of other good suggestions of things for me to try and/or ask Dr Coakley about. I was impressed with her medicine/supplement/physiology knowledge about everything! After over 3 hours of talking, she finally examined me - taking several pulses, drawing a diagram of my tongue and its various markings, listening to my lungs. I finally got on the table (which prompted a small lung bleed - what a first impression!) for a little needling and electricity. And I rounded the whole thing off with a good coughing fit for which she adjusted my chi and pretty much instantly stopped the coughing.

So back to my opening statement. Now you see how this has been an intense week - a lot of realization and coming to terms with emotions that have been hiding below the surface. It has been rewarding because I have felt better, whether it's from not drinking, pulmonary rehab or all the other good stuff I've been doing - my lung functions were up some at my pulmonary appointment on Thursday which is great!

It has last but not least been thought-provoking not only because of my internal work but also because I am being forced to begin the process of researching my options for further disability assistance should I feel that is necessary. This is not only very tedious in terms of paperwork and bureaucracy, but also emotionally difficult as well. I love my job, I love my co-workers. I am incredibly fulfilled by my work. I do not want to give it up.

There is also potentially a huge effect on my health insurance - I'm not sure all the ins and outs of this yet, but if I were to lose my work insurance (hopefully not!!!) I would be in an entirely different situation when it comes to medical insurance, prescription coverage, and, especially, transplant. So that will no doubt be a big part of my decision. It would be nice to be able to make the decision based entirely on what is best for me, but unfortunately that is not the world that we live in, Obamacare and all.

So yes: busy week, crazy week. I didn't even mention that our dog Sam finally had surgery to remove some lumps, that we are Finally preparing to see a lawyer to get our wills done and that we are FINALLY planning on starting to renovate our bathroom next week!! Stay tuned.

Time to Get Down to Work

I am currently four weeks into being off work on short-term disability. The current plan is to be on for two more weeks and then reevaluate. I am taking this time to try to focus on my health and improve my lung functions and functioning (i.e. needing less oxygen). But what does it mean to "focus on my health?"

Well, I honestly am not totally sure. The primary thing it means is attending pulmonary rehab for 2 hours twice a week to increase my strength and stamina. I have completed two weeks of that so far. And not only that but pushing myself to be active between rehab sessions as well. I am trying to do something strenuous one additional time per week (I will tell you at some point all I do in rehab) as well as add in less strenuous dog walks. And maybe get back into a pilates classs at the Y.

But what else? Well, taking it easy, getting plenty of rest, spending LOTS of time with my kitties, trying to stay hydrated...staying connected with family, friends and the CF community, catching up/keeping up with things at home, documenting everything, of course.

But there is something missing... 

Let me back up. For months, two of my best friends have been trying to get me to see this Chinese doctor who is an acupuncturist and also an M.D. My two friends have both had amazing results with her. I have dragged my feet because, well, for a few reasons.

One, I have done a lot of acupuncture in my day and while it helped some, I'm not in a huge hurry to jump back into it. It's sometimes not the most fun thing in the world. Two, I knew it was going to be a big money and time commitment (one of those I have a lot of right now! The other, since I'm not working, not so much...)  Three, I knew that going in there would be sort of a life-changing experience and I honestly didn't know if I was ready for that.

See, Lynnea doesn't just treat what you supposedly go to her for, which in my case would be help with lungs, kidneys, sinuses, immune function, back pain, etc. She treats everything. And, to put it mildly, I know there are a lot of things I could be doing better to have a healthier lifestyle.

But it's so hard! I honestly do so so much and spend so much time to stay healthy: I am extremely compliant with treatments every day, I go to all my appointments, I am very proactive with my doctor and my CF care that I feel like I can cut myself a break when it comes to other stuff like how much coffee I drink, what kind of (sometimes unhealthy) snacks I eat, how much beer I drink. And to some extent I think this is okay. But there is this nagging voice inside my head that wonders - what if I gave it my all, what if I did everything possible to try to feel my best, how good would it be possible to feel? And what effect would that have on my lung function?

I honestly haven't had the will power to find out. Or maybe it's that I am afraid that if I did all of those things I would still be pretty much the same as I am now - I'm not wanting to put in all the time and effort for an unknown reward.

In any case, all of that I have just written about is me when I am accountable only to myself (and you all!) But starting on Monday, I am going to be accountable to Lynnea also. I intend to dive in and give it my all. No holding back, no exaggerating, no fudging.

I have at least two weeks off of work left. If I am going to do everything possible to be my very best self between now and then, I think I am starting down the right path.

New Years Resolutions

I'm a big fan of goals, but not much for resolutions. However, I have been thinking about what I want to get out of the coming year and so it seems appropriate to write about it.

1. Spend more time with family. With my family so spread out (Michigan, Ohio, Indiana, Pennsylvania, Virginia, Florida, Montana), it is difficult to visit everyone as much as I'd like. But I want to make seeing family - both immediate and some others who I haven't seen as much recently - a priority.
   
   

   

   Simon and Nathan, Thanksgiving 2013 in Cleveland

2. Remember to put myself first and not feel bad about it (I stole this from my friend Kim - hee hee). This actually has played out a number of ways already recently. For instance, me deciding to go on short term disability for work - that was something I would have had a very hard time doing in the past. But I did it! With no remorse. But there will be more difficult choices ahead...especially if things don't improve a lot from where they are now.
   
   I need to learn when to say no to friends, trips, hockey games, all of it. I just don't have as much energy as I used to. I've gotten better about this but it's still not easy. And I need to keep this in the forefront of my mind and know that it is something that will pay off in the long run even though it sucks in the short term.
   
   
   
   
   
3. Continue on with Project Simplify. Project Simplify is what I am coining my massive house purging/organizing/tidying efforts that have been going on. I have gotten rid of a ton of stuff that I don't use or that I was hanging onto for the wrong reasons. I want the meaningful stuff that I save to truly have meaning, and that doesn't happen when it's mixed up with a bunch of other junk.
4. Get paperwork in order: get both of our wills and powers of attorneys taken care of; know each others wishes for after we are gone. It sucks but it has to be done.
   
   

   

   Some volunteers at Safe Haven for Cats...I see more kitty time in my future!

   
   
5. Spend more time with kitties. I don't think it's possible for me to spend any more time with my own kitties than I already do...although that's always something to strive for! I would like to look into possibly volunteering at Safe Haven for Cats one day a month. It all depends on if they have something that is a good fit (i.e. no cleaning kitty boxes but maybe something with writing or their website?)
6. Try to make good choices, but when I don't, don't beat myself up about it. I don't know any good that has ever come from beating yourself up about something you didn't do like you wanted to. Today is a new day! Treat it as such and move on.

Surviving the Holidays on IVs

My oldest friend Erica and I at my Birthday Bowling party

Well, I survived the holidays on IVs - and oxygen, I should add, since that was a big new adjustment for me.

My birthday bowling party was a ton of fun! Had a great time with friends. It was also kind of like a "coming out" party for me with the oxygen. And it went rather well I think. Obviously my friends are pretty awesome so that helped. :)

We really wanted to make it up to the mountains but that didn't end up happening. Between my bi-weekly labs and medicine delivery schedule it just wasn't possible. Plus, it was probably best for me to hang around here anyway and to enjoy mountain time when I'm feeling a bit better (in other words, when I'm needing less oxygen.)

Christmas Time is Here 

As anyone knows who has ever heard the song "Christmas Time is Here" from A Charlie Brown Christmas, there is both a sweetness and a sadness about the holidays. When we're young, Christmas is pure joy. But as we get older and start to value family time over presents, we can't help but be reminded of people we've lost, those who are no longer here to celebrate with us.

And there was plenty to be sad about this holiday...  It was our second Christmas without Todd's dad, who always made a huge deal about getting presents for all of the grand-dogs and having a big Christmas morning with them. Todd's cousin who has been battling (I hate using that word) stage 4 cancer for several years almost died a few days before Christmas. My health is clearly not doing well. One of our good friends is moving out of the country.

BUT, lucky for us we have all of that to balance with having an amazing group of friends, a supportive family, nieces and nephews to spoil and whose holiday excitement can't help but be contagious, our furry children who provide endless entertainment and (cheesy alert) each other.

Sam, taking a breather after opening Christmas gifts

Speaking of amazing things, some news about my job

I told you about how I unapologetically (for the first time ever?) took these three weeks on IVs completely off of work - three weeks which, incidentally, ends today! (More on that in a sec.) And the crazy thing is, I actually stuck to it. I haven't worked, and I haven't felt guilty about not working.

But, at the encouragement of my boss, Todd and pretty much everyone around me, I have decided to go on short-term disability for a while longer to extend the time that I have to recuperate and hopefully get my lungs in better shape with pulmonary rehab, etc. I am not quite sure what this "focusing on my health" time will look like, but I will definitely keep you all posted.

Lastly, an update on my health

Last, but never least, here is an update after 3 weeks on IV antibiotics:

• I am feeling pretty good, but I caught a cold on Christmas Eve that has hampered my improvement and has made the IVs less successful overall than I hoped.
• My lung functions have come up a tiny bit though! I am at least consistently over the 1 liter mark.
• My kidneys did great with the Tobra, my port is working fine after a period of suspecting a partial clot, and all of my blood draws went very well thanks to my amazing nurse who can do some serious acrobatics with a butterfly needle.
• I had my first 2-hour session of pulmonary rehab yesterday. It went really well! I think it's a good sign when they have to tell you to slow down. :) It's going to be really hard, but I am up for the challenge.
• One question mark hanging out there is how my back is going to deal with this increased activity from pulmonary rehab. It has been bothering me a little - some of that is good because I know I need strengthening - but I hope it doesn't become a problem. I have had to take Tramadol for the first time in a few weeks.